Citizen Scientist Project for Rhabdomyosarcoma Cures
Rhabdomyosarcoma and soft tissue sarcomas are among the five greatest causes of death from childhood cancer and are among the most unaddressed causes of childhood cancer morbidity. Despite 49 years of cooperative group trials of intensified chemotherapy, the dismal survival for advanced disease remains unchanged. The goal of this project is to bring consumer (patient)-level participation and accountability to a new, strategic approach to developing, testing and prioritizing new rhabdomyosarcoma drugs for incorporation into cooperative group clinical trials. Unfortunately, many RMS patients do not have the luxury of time. Therefore, all studies will be focused on testing existing FDA-approved or already clinically-investigated drugs with the goal of repurposing them for quick transition to treat RMS. To further expedite this research project, this fundraising goal includes an allocation to support the employment of a full-time researcher dedicated to this project.
A major difference in this project from other grant -funded research is that patients will be embedded in our research team, and presentations of our progress will be given to these science-empowered patients and family members weekly.
Meet our first Visiting Citizen-Scientist in Residence - Megan Bugg
My name is Megan Bugg and I am a 6+ year stage 4 alveolar rhabdomyosarcoma cancer fighter. During my personal battle I have been through 4 relapses, 133 weeks of chemotherapy and 197 radiation treatments. Through my experiences I have become a passionate advocate for childhood cancers. My personal goal is to make sure no more kids have to experience what I have gone through.
Want to be a citizen-scientist, too? Email me at firstname.lastname@example.org.